Sophia Weaver is a 10-year-old girl who suffers from Rett syndrome, Type 1 Diabetes, as well as extreme facial deformities. Because Sophia has a weakened immune system, she isn’t able to enjoy everyday public activities like going to a restaurant or going shopping. Although her life looks different than most, her mother, Natalie Weaver, has made an effort to ensure her daughter lives as happy a life as possible.
Natalie often posts pictures of her daughter on social media in hopes of expanding awareness and understanding about facial deformities. As a result, she’s had to defend her daughter against many hateful and cruel comments, according to Today.
Because Sophia looks quite different than other children, insensitive internet users have been quick to make nasty comments about her appearance online. Natalie has spent years advocating, not only for her daughter, but for other children with special needs. She was able to persuade Twitter to include disability discrimination in its harassment reporting tool in order to cut down on the hateful comments those with special needs may receive. Social media can provide a positive outlet and a voice for those who live with disabilities and this addition to the reporting tool will aid in keeping Twitter a positive platform for them to use.
Natalie Weaver's daughter Sophia has Rett syndrome, a neurological disorder that impairs brain development. A particularly cruel tweet led Weaver on a months-long struggle to protect her daughter. https://t.co/FPZgEb1Fxe pic.twitter.com/piDx8tSPb6
— CNN (@CNN) February 7, 2018
Ever since her daughter was born, Natalie has fought for her tirelessly. Unfortunately, Sophia’s health condition has recently worsened. Her organs are failing and she’s been placed in hospice care. It’s been an unimaginable adjustment for Natalie as she comes to accept that she must learn to let her daughter go. However, she knows that Sophia is tired.
“Sophia’s entire life, I would say I would listen to what my daughter’s body was telling me. It is telling me she is tired.”
While Sophia typically bounces back after medical procedures, her last surgery left her unresponsive for days. It became clear to her parents that it was time to end extensive medical care so that she could live out her remaining days in peace. Instead of giving in to their grief, her parents have been hard at work to ensure she gets to have as many life experiences as possible during this time.
Sophia had the opportunity to visit a hair salon for the first time when the owner opened up shop early just for her. She also got to attend a movie theater and enjoy other activities most people often take for granted. Natalie finds comfort in knowing she’s always done everything she could for her.
“I have always done everything I could to give her the best possible life … these changes are necessary for her,” she said.